Controversy 2013

2013 marks 25 years since the publication of the Cartwright Report. The role of feminists in the initiation and conduct of the Inquiry remains controversial. In the paper (1), reproduced below, Phillida Bunkle analyses feminist input into the Inquiry and events over the subsequent five years leading to implementation of Cartwright’s reform recommendations.

Bunkle’s analysis is based on careful consideration of original documents, particularly the three Submissions she, Sandra Coney, Dr. Forbes Williams and their counsel Dr. Rodney Harrison made to the Inquiry.

Bunkle argues that feminists provided the blueprint for comprehensive reform and that the ideas on which it was based were derived from their experience in the Women’s Health and Women’s Rights Movements.

1. ‘Feminist input into the development of patient-centred health
care in New Zealand’. Women’s History Magazine, no 71 Spring, (2013) 12-22.

Phillida Bunkle

Introduction
Community-based women’s health groups emerged
from the feminist movement of the 1970s and 1980s,
particularly in North America and Australasia.’ They were
the second wave of ‘recurring episodes of multi-issue
women’s health activism’ in what has been called the
‘mega-wave’ of the Women’s Health Movement (WHM).^
The WHM greatly influenced subsequent medical reform,
its feminist principles leading to a transformation of the
relationship between patients and health providers.
However, two arguments seek to minimise the contribution
of the WHM.
On the one hand, revisionists, hostile to feminism,
argued that feminist criticism of the failings of the medical
profession during the 1960s and 1970s was factually
wrong, and that the extreme views expressed by feminists
detracted from changes that were already underway.
On the other hand, medical defenders of reform also
minimised the contributions of feminists and suggested
that alienation of the medical profession by feminists
impeded change from within. This paper attempts to
correct recent historical scholarship, and contrary to both
views, I argue, that the WHM was remarkably successful
in achieving institutional reform and more effective patient-centred
care.^
I substantiate my argument by considering the
Cartwright Inquiry, which took place in New Zealand in
1987-8, and the subsequent Report.” Using this material, I
show that feminists not only were correct in the conclusions
they drew at the time but also authored a comprehensive
plan that became the blueprint for subsequent legislative
reform. I argue that this plan for reforming the relationship
between patients and the health service arose explicitly
from feminists’ experiences in, and addressed needs
identified through, the activities of the WHM.

The WHM in New Zealand: health activism
1970-2000
In June 1987, New Zealand women’s health
activists Phillida Bunkle and Sandra Coney published an
article, ‘An Unfortunate Experiment at National Women’s
Hospital’, in the Auckland magazine, Metro.^ The authors
had met in 1973 at the First United Women’s Convention
of which Coney was a convener and Bunkle a speaker.^
Both were active feminists (Coney edited Broadsheet,
New Zealand’s feminist magazine) and throughout the
1970s and 1980s they participated in campaigns around
sexual health, reproductive rights and maternity services.^
In 1984, they founded Fertility Action, which evolved
into Women’s Health Action, becoming part of a loose
grassroots network, which was spreading in ‘dozens of
small towns and large cities’across North America and
Australasia.^
These groups asked questions unrecognised by
medical institutions.^ Fertility Action’s first campaign was
for chlamydia testing and treatment. Huge resources
were being devoted to the development of IVF but none
to preventing the infections which were the major cause
of tubal infertility. The control of reproduction was publicly
contested between the Religious Right and Family Planning
Association, which prioritised population control.^” Fertility
Action argued that the ‘choice’ to conceive and the ‘choice’
not to were equally valid and should be determined by
women themselves.^^ The protection of patient autonomy
and physical safety were both essential values in health
provision.’^
Coney and Bunkle are criticised for inconsistent
attitudes towards intrusive medical interventions. It is
alleged that these inconsistencies show that they cynically
selected issues to pursue a wider feminist agenda.^^
However, the information Fertility Action disseminated
on issues such as contraceptive safety, STD prevention,
hormonal medications or surgery was based neither on a
blanket opposition to medical intervention nor advocacy
of naturalistic therapies but on pragmatic assessments of
harm or benefit.
Like their American counterparts, Bunkle and
Coney’s organisation aimed at institutional, attitudinal and
policy change; like most women’s health groups, they relied
entirely upon voluntary activity and limited community
resources.’” This guaranteed their independence but
created institutional weaknesses characteristic of much of
the second wave of WHM.’^
Commentators suggestthat internationally the WHM
contracted during the 1990s in a climate of ‘vociferous
pressure’ to depoliticise advocacy in response to changes
in health ownership structures and the corporatisation of
the state. Corporatised health-care adopted the ‘language
of empowered consumers [as] part of the neoliberal
agenda … contribut[ing] to a depoliticisation of health care
advocacy’; it commodified women’s health, translating the
power discourse into the language of the market place.’^
In the 2000s, commercialised marketing saw women’s
health transformed from a movement for collective
political change into individualised fitness and lifestyle
programmes.’^
With the passage of the State Services Act in
1987, New Zealand introduced New Public Management
(NPM) to the developed world and, through the 1990s,
it provided the proving ground for the neo-liberal policy
agenda. Coney and Bunkle consistently criticised the neoliberal
political economy which was driving health policy,
and which saw most state health expenditure distributed
via privately-owned, for-profit, GP businesses.’^ The
success of this policy in overcoming doctor resistance to
privatisation means that it is now being vigorously pursued
in Britain.’^
By the 2000s, Women’s Health Action was ’producing health information, running an information line and supporting health consumer’s rights; it lobbied health officials and advocated institutional changes’.^” Like other
groups, while still nominally independent, the organisation
had adapted to corporatisation and contracting out.^^
However, by this time, Bunkle and Coney had moved on
to wider political engagement opposing neo-liberal health
politics.

The WHM in New Zealand: institutional
background
The WHM of 1970s and 1980s should be understood
in the context of the institutional structure of medicine at the
time, which reflected the dominance of university teaching
hospitals in the production of medical knowledge.” From
the late 1930s, and greatly accelerating post-World War
II, medical knowledge-making resulted from a conjunction
of clinical research, laboratory science and applied
technology.^” The post-graduate departments of university
teaching hospitals brought together a supply of ‘clinical
material’ and advanced research laboratories. Technical
progress was rapid and widely assumed to justify the
application of experimental treatments. Hospitals also
provided a ready supply of ‘teaching material’ to facilitate
the dissemination of these new and powerful technologies
among the profession. They were hierarchical institutions
dominated by consultant-professors. Access to treatment
was largely determined by clinicians, supported by the
doctrine of’clinical freedom’ which protected the autonomy
of senior clinicians. The few managers had little influence
over clinical priorities.
Auckland’s National Women’s Hospital was a
typical post-war, specialist hospital, state-funded and
dominated by Auckland University’s Post-Graduate
School of Obstetrics and Gynaecology. Within the
hospital-based system of knowledge production, prestige
was determined by the research record of all powerful
consultant-professors. The head of National Women’s
was Professor Dennis Bonham, who chaired both the
Hospital Medical Committee and the Ethics Committee.
Bonham was recruited from Britain where he played a key
role in research which justified bringing all births into the
domain of hospital specialists.^^ In New Zealand, he led
the argument against independent midwives and midwife led
maternity hospitals.^^
It was no surprise that a hospital primarily concerned
with reproduction became the flash-point for challenges
to medical power: women bore the brunt of the sexual
revolution yet predominantly male doctors determined
access to fertility control, while a generation of young
women whose expectations of autonomy were shaped by
their access to secondary and tertiary education became
disempowered patients when giving birth. Both Coney
and Bunkle, with many of their contemporaries, shared
their appalled reaction to patronising treatment during
childbirth.2′ Furthermore, patients who questioned, or
attempted to refuse, treatment were regarded as irrational
and could legally be denied further intervention. Auckland
Hospital Board by-law 4.5 stated, ‘Unreasonable refusal to
comply with treatment programmes shall render a patient
liable to discharge from hospital’, ‘unreasonable’ being
defined solely by the consultants. Some patients feared
that they could be denied future care.^^

In the 1970-80S, in reaction to the hegemony of
doctors, patients’ rights issues were brought into public
debate largely by the WHM. Feminists analysing the
connection between personal experience and social
reality concluded that the sharing of experiences as
patients created a strong validation of a common reality.^^
By contrast, in medical knowledge, personal experience
was seen as contaminating truth. Patients’ experiences
were not part of official medical knowledge and were
dismissed as private and irrelevant.^” The WHM warned
that such objectification of patients could lead to inhuman
and sometimes unethical treatment.^^

The road to Cartwright: the ‘Unfortunate
Experiment’ article
Bunkle and Coney’s ‘Unfortunate Experiment’
article, written in 1987, described unethical research
conducted at Auckland University’s Post-Graduate School
of Obstetrics and Gynaecology.^^ They had been alerted
to the experiment when a supporter drew their attention to
a 1984 medical article providing a retrospective analysis
of cases.” The ‘Unfortunate Experiment’ article explained
that some women with precancerous carcinoma in situ of
the cervix (CIS) or genital tract, now known as CIN 111,
had, without their knowledge, received only repeated
diagnostic biopsies and cervical smears. They had been
left untreated or undertreated in order to study the extent to
which they developed invasive cancer. Some women had
dozens of surgical procedures not directed at eliminating
disease. Many developed invasive cancer and some died.

The article revolved around the experiences and case
notes of patient Clare Matheson who developed invasive
cancer after initially having only diagnostic biopsies.^
The article provided evidence that, in 1966, the study
of CIS had been formalised into a research programme.

By the early 1970s, although deaths had occunred and
the dangers of developing invasive cancer had become
apparent. National Women’s Hospital did not formerly end
the research or act to save the remaining patients. Instead,
it marginalised critics of the programme, even among
senior staff. The Hospital Board, senior clinicians and
professors of Auckland University, particularly Bonham,
were implicated in responsibility for the research and its
consequences.
The New Zealand government responded to the
Bunkle and Coney article by setting up a judicial inquiry
entitled ‘The Committee of Inquiry into Allegations
Concerning the Treatment of Cervical Cancer at National
Women’s Hospital and into Other Related Matters’. Headed
by District Court Judge Silvia Cartwright, it became known
as the Cartwright Inquiry. The processes and evidential
rules of a judicial inquiry are those of a court of law, but
with additional powers of independent investigation.
Significant Parties retained senior counsel and vigorously
cross-examined witnesses. Unlike similar inquiries in
Britain, such as the Ledward Inquiry, parties representing
consumer interests participated throughout.^^ Matheson,

Coney, Bunkle and Matheson were represented at public expense
by noted civil rights lawyer, Dr Rodney Harrison OC, and
the women maintained a constant presence through the
six months of the Inquiry, supported by public donations.
The Inquiry developed an independent evidence
base from analysis of the clinical records of hundreds of
women. These records were available to all parties and
were the basis of rigorous cross-examination, particularly
of international medical experts. The findings and
recommendations of the Inquiry were published by the
New Zealand Government in August 1988, in what has
become known as the Cartwright Report.^^ The Report
found that the allegations made by Bunkle and Coney in
the original ‘Unfortunate Experiment’ article were largely
correct, and the New Zealand Government accepted the
findings, agreeing to implement its full recommendations.

The road to Cartwright: Cartwright’s
recommendations
The major recommendation from the Inquiry was
that the health system should be run in the interests of
patients rather than professional interest groups.^’ The
Cartwright reforms were based on five related innovations:

a human rights approach to patients’ rights;

an understanding of ‘treatment’ which extended beyond medical procedures to respect for patients’ dignity, including their right to effective communication and informed consent;

the development of a legislated Code of Patients’ Rights;

an independent Health Commissioner, external to the medical professions, charged with adjudicating medical providers conformity to the Code, enforcing its provisions and compensating victims;

the employment of independent patient advocates.

The Cartwright recommendations also included the
establishment of independent ethics committees,
composed of half consumer representatives, half
professional scientists and a lay chair. The focus of the
committees should be to protect patients.
This New Zealand system of patients’ rights
which eventually became enshrined in law and external
to the medical profession remains unique. Despite this,.
it is widely regarded as a model for reform.

The move toward a patient-centred health system also led to the
participation of consumer representatives, including Maori
and Pacific Islands women, at many levels of health
policy decision-making, particularly in the development
of the recommended national cervical cancer screening
programme.

Feminist submissions to the inquiry: the
First Submission
Community and women’s health groups made
submissions to the Inquiry urging the case for reform.
Coney and Bunkle made three submissions. This paper
considers these in detail because they were the source
of important Cartwright recommendations and accurately
record the feminists’ conceptual and analytic input into the
Inquiry and its outcomes.
The First Submission of Evidence, written by
Coney, Bunkle and medical doctor, Forbes Williams, and
delivered by Coney early in the Inquiry, brought the patients’
experience to the centre of proceedings.^^ It documented
numerous examples of cervical smears ‘suggestive’
or ‘conclusive for malignancy’ and other pathological
findings which had been ignored or merely followed by
further diagnosis.^* The primary impact of this evidence
was not to enumerate failings but to articulate patients’
experiences. This submission implied that objectification
of patients was linked to their inhuman treatment: one
consequence was to expand the definition of ‘treatment’
and focus the Inquiry on patient welfare rather than upon
narrowly-defined ‘medical facts’.
The First Submission aimed to embed the patient
point of view at the centre of the Inquiry by bringing
the submerged reality ‘of this experience … before
this committee of inquiry’.”” Patients ceased to be an
abstraction: until then, their ‘personal’ stories had remained
in the unofficial world of anecdote; now they became the
touchstone of judgements about the adequacy of the
medical system. The effect of this submission was to
reverse the assumed order of reality and it was this shift
which was to be the most momentous outcome of the
Inquiry. It originated in the feminist analysis of ‘personal’
life shaped through the structures of power and was a
concrete example of the WHM perspective in action.”^
The First Submission argued that the first Term of
Reference of the Inquiry on the adequacy of treatment of
CIS:
‘… is too narrowly drawn. The question isn’t
whether CIS was adequately treated, but
whether women were adequately treated.
A doctor may cure a patient’s condition
while mistreating the patient … clinical
management… is not the only question. The
concem of the Committee should be on how
women were treated, not on how a certain
collection of cervical cells were treated.
… Informed consent is integral to adequate
treatment. Adequate treatment concerns
both what the women experienced, and what
they knew … it involves the whole pattern
of interaction between the hospital and the
women … An adequately treated person
is not left impotent, vulnerable, nervously
wondering what had been done to her, or
anxiously, even desperately wondering how
to find out.”^
Telling women’s experiences emphasised what medical
case histories usually filtered out; the practical realities of
money, gender and race came into view. The vulnerability
of patients uninformed about their condition and unable to
protect themselves became clear. The First Submission
established that the invisibility of patients was a safety
issue.
The effects of this ignorance were widespread and
on-going, and many victims only came to light because
of the publicity surrounding the Inquiry.”^ Barbara, for
example, only discovered after reading the original Bunkle
and Coney article that she had been treated for CIS: 1
was stunned, I was so shocked to find out that I had been
treated for something that I did not know I had … I feel
betrayed’.”^
The Submission argued that when patients are not
given information,
… it renders them powerless and thus
ensures acquiescent behaviour, but passivity
is ensured at great cost. It means that they
have no basis on which to make decisions;
they cannot make choices. It violates their
autonomy and their basic right to the integrity
and control of their own body. It places them
at grave risk.”^
Nor were the risks confined to the development
of invasive cancer. Pauline, for example, first aftended
the hospital the year the Inquiry began for what she
understood was ‘a simple follow up for a routine smear’.
She was ‘fiabbergasted’ when a professor took biopsies:
‘I knew nothing of what they were doing’.”^ The consultant
ordered cryotherapy, ‘I did not know what it was … they
would give me no information’.”^ Pauline’s notes showed
she had been trying to conceive but she was not asked
about possible pregnancy. She later miscarried but when
she asked the house surgeon if the treatment she had
received could be the cause, he ‘looked uncomfortable
and said he could not tell her … the doctor who finally
came was off-hand and down-right rude’.”^ Despite
repeated requests, her questions remained unanswered
until she accessed her case notes through the Inquiry.
She said there was ‘no one I could talk to about all this.
The Inquiry has given me a voice’.”^
The follow-up involved in the CIS research placed
enormous stress on many women. Ignorant of their
condition, they had no motive to repeatedly aftend the
hospital. For example, Mrs W., a Maori mother of sixteen
children, first aftended in 1970 with a smear ‘conclusive
for malignancy’ and suggestive symptoms. A cone
biopsy, known to be incomplete, showed ‘fairly extensive
CIS with microinvasion’. She was in severe jeopardy
but did not know it.^° Mrs W. became pregnant with her
seventeenth child; a tubal ligation was carried out, but not
a hysterectomy and her smears continued to be ‘strongly
suggestive’ or ‘conclusive of malignancy’.^^ She began
missing appointments, ‘… owing to financial difficulties’,
but the only lefter to her GP gave no reason to alert him to
the danger his patient was in.^^

There is no further record
of Mrs W. until 1981 when the hospital notes state she
has ‘obvious carcinoma of the cervix’. She was finally
treated with radiation but by 1982 the notes record that
‘she looks and feels exhausted … looking after three
teenaged children … [is] … now beyond her. Clearly she
has considerable metastatic disease’.

She died four days later. Associate Professor Herbert Green, the principal researcher, noted that after 1973, ‘she could not be got back to the clinic’, effectively blaming her for her disease and death.^’

The First Submission ended with a detailed account
of the treatment of Joyce, a thirty-nine year old widow,
written by Dr Forbes Williams.^ Joyce had received a
tubal ligation following the birth of her third child. In 1961,
she was admitted for a cone biopsy following smears
‘conclusive for malignancy’. The pathology report showed
incomplete removal of the lesion with ‘undifferentiated
carcinoma of the cervix’ and possible ‘early microinvasion’.
In other words, like Mrs W., she certainly had
CIS and possibly invasive cancer.

In the following nine
years, Joyce made twenty-two hospital visits and was
treated for many neurologic symptoms, including pain and
a ‘neurogenic’ bladder. By 1972, she was in ‘great distress
and pain … she even talks of suicide the pain at night is
so bad’.^^ Her long journeys to the clinic resulted in more
surgical biopsies, while smears ‘strongly suggestive’ or
‘conclusive for malignancy’ continued. By the mid-1970s,
Joyce was on Valium, sleeping pills and antidepressants,
but the abnormal tissue had still not been definitively
removed. In 1978, after seventeen years of investigation,
Joyce probably became aware for the first time that she
had invasive cancer. She endured radium treatment, but
a year later cancer had invaded her bowel, and in 1982,
during her sixty-fifth visit to the hospital and after twentyone
years of almost continuous investigation, more than
fifty vaginal exams and twenty-four major procedures, she
died, but with her uterus still intact.^^ When Coney finished
reading Joyce’s story, counsel were visibly shaken. From
now on the Inquiry was about the women.

Feminist submissions to the inquiry: the
Second Submission
Having established the extent of the problem and
the primacy of the patient interest, the task of the Second
Submission of Evidence was to analyse how and why
the institution had been unable to right itself. The Second
Submission, wriften by Coney, Bunkle and Williams and
edited and compiled by Bunkle, analysed the failure of
medical accountability and recommended comprehensive
reform.” It began with an analysis of the hospital power
structure and its disempowering impact on patients and
medical students.
Analysis of the socialisation of medical students,
contributed by Williams, used the idea of the ‘hidden
curriculum’, familiar to feminist educational circles at the
time, to underline the significance of teaching vaginal
examinations and lUD insertions on anesthetised, nonconsenting
patients.^* This curriculum teaches ‘a one
sided mode of interaction [in which] the patient is irrelevant
[and] the doctor’s interests take priority … the conscious
presence of the patient is threatening or a nuisance.
Students “learn” to act as if it would be preferable that
the woman was not there’. Further, it advises students to
construct ‘a separation of the sentient, thinking person
from their body, especially from “down there”‘. Students
are given the impression of being ‘initiated into a secret’, a
secret withheld from the patient.^^
The Submission described the experiences of one
woman having a colposcopy examination where the patient
was especially exposed and vulnerable. She declined to
have students present. However, when some students
arrived she found herself, ‘being scrutinized by a number
of pairs of eyes’. When she objected to this, instead of the
students leaving she was ‘offered a cloth to put over her
face’.^° As the Submission noted: ‘It is her response which
is questionable, not the doctor’s presence. [The doctors]
approximate to the situation where she is anaesthetized,
rather than by seeking her consent or giving her some
control of the situation’.^^
The Second Submission located the problem in the
ubiquitous power of a profession used to making policydecisions
unilaterally, across the whole of healthcare,
including the rights of patients. Doctors claim to have their
patients’ best interests at heart, but it is they who decide
what those interests are, and this, the Submission claimed,
‘renders us passive and infantile. We are not judged to be
adult enough to make out own decisions and understand
information about our own health’.^^ The Submission
concluded that the autonomy of the medical profession
should be dismantled, with accountability determined not
by ‘paternal goodwill’ but as ‘a fundamental requirement
of legitimate action’.
Drawing on Carolyn Faulder’s book. Whose Body is
it?, the Second Submission went on to consider informed
consent as ‘a first step towards protecting patients’.” It
identified the features of consent common to treatment,
teaching and research, arguing it was of first importance
to a patient to know where to turn for information and
to understand who it is who makes the decisions. The
patients:
… may be told repeatedly that the people
they ask are not allowed to give them the
infonnation they seek, but they may not be
told who can, or they may have no access
to them. This bewilderment creates quite
unnecessary anxiety … and a sense of being
entirely deprived of the most basic rights to
understanding and self-determination which
can be very frightening and makes the patient
unnecessarily vulnerable.^
Informed consent, the Submission determined, should
also incorporate the right of a patient to terminate
treatment without jeopardy; the right to ask questions and
demand disclosure of the practitioner’s personal bias; the
legal right to access medical records; and the provision
of mechanisms for facilitating understanding, including
translation for those, such as Maori and Pacific Island
people, whose language is not the dominant one. Most
importantly, in all circumstances, consent should include
‘a statement of the legal rights of the subject including the
right to compensation for injury’.^=

This analysis of consent
moved logically to advocate the need for a non-voluntary
Bill of Rights, enforceable in law, providing adequate
means of redress and backed by patient advocates
independently employed to support them.^^
The Second Submission also provided a detailed
examination of failures to gain consent from research
subjects. The Minutes of the National Women’s Ethics
Committee had become available through the Inquiry
and clearly showed that in-house ethics committees were
haphazard and ineffective.^” Their structure and function
needed radical overhaul including the introduction of
effective mechanisms, a common national framework and
legislated powers.

By the time the Second Submission was
presented to the Inquiry, public opinion had already been
mobilised by the revelation that the principal researcher,
Herbert Green, had taken cervical smears from 2,200 girl
babies born at the hospital without parental knowledge.
He had also collected cervices from still born and dead
neonates without parental consent. The claim by some
hospital staff that patients entering a teaching hospital
gave ‘implied consent’ to anything that was done to them
only served to reinforce public concern.
The Second Submission focused on formulating
achievable and effective policies to reform common
practice.^^ It proposed a two tier process of ethical
oversight of research. The first stage of scientific
assessment by experts would ensure the scientific validity
of research; the second stage, evaluating both treatment
and research, would lie with Ethics Committees which had
a clear focus on patient protection and a majority of lay
representatives, ‘preferably chosen by the people they
represent and definitely accountable to them’.^^
The Submission discussed the deficiencies of
the various mechanisms said to ensure professional
accountability: there were two possible avenues within
the hospital system, a peer review process and the
Hospital and Hospital Board complaints procedures.
The Submission provided evidence of the inadequacy of
both.

There were also two possible avenues for complaint
external to the hospital system. The first was the Medical
Practitioners Disciplinary system, for complaints about
individual practitioners. Clare Matheson’s experience
showed that this was costly, legalistic, dominated by
professional self-interest and unlikely to result in systemic
improvement or public acknowledgment of error and
provided no compensation for patients.’”
The second route for medically-injured patients
was a claim to New Zealand’s unique no-fault Accident
Compensation Corporation (ACC). While ACC could
award compensation, the grounds were limited and the
sums likely to be miserly and paid after considerable
delay. The ACC system removed the possibility of civil
action for compensation through suit for negligence.
The Second Submission argued that subjects of the
‘Unfortunate’ or other experiments were afforded no
real protection. Medical practitioners were effectively
protected from the consequences of injurious treatment
of patients. There was urgent need for comprehensive
reform providing substantial redress for medical injury and
realistic compensation.’^

Feminist submissions to the inquiry: the
third Closing Submission
The challenge to devise an innovative structure
which plausibly remedied the failings identified in
the Second Submission was met in the third Closing
Submission. It was prepared and presented by counsel,
Dr Rodney Harrison.^^

The Closing Submission spelled
out innovative proposals for a human rights approach
to patient protection independent of and external to
medical professional bodies. No other jurisdiction at the
time provided an alternative model to professional selfregulation
or incorporated legally enforceable rights for
patients.
The Closing Submission made a case for
comprehensive legislation as a ‘matter for the national
interest’ rather than internal reform of particular
institutions.^^ Legislation in respect of medical research
should, ‘…be coupled with legislation dealing with “Patient
Rights”, and [with] … informed consent to treatment, and
… the use of patients for teaching purposes … A corollary
of reform should include … the establishment of Patients
Advocates and provision … of full-time interpreters to
assist those patients who have language difficulty’.^”
A number of agencies endorsed the need for
legislation.^^ The Ministry of Women’s Affairs proposed a
statutory code of patients’ rights but suggested no particular
model of legislation.’^ The Closing Submission suggested
a system based on the Human Rights Commission and
drafted, in some detail, a ‘proposal for a Patients’ Rights
and Medical Research Procedures Act’.”
The framing of patients’ rights as human rights grew
logically from the feminists’ analysis in the First Submission
and from their experience of the Human Rights Act in
promoting women’s rights.

The mechanism of the Human Rights Commission

had advantages for disempowered patients; it was free to users and the onus for the investigation of complaints fell upon the Commission. For the injured patient, this seemed preferable to legal action facing, unassisted, the entrenched power of professional bodies and their insurers.

The proposed system provided
extensive capability for the Commission to investigate
complaints and seek redress, including compensation.
The Submission argued that enforcement powers should
include breaches being ‘punishable by a substantial fine’,
not precluding ‘high court damages for breaches’ as a
back-up. Furthermore, by providing a one-stop-shop
for complaints, the Human Rights Commission would
simplify the system for the complainant and simplify the
bewildering parallel systems, each with different obstacles
to overcome.
The Closing Submission called for extensive
community consultation and representation of consumers
in developing and implementing the new act.’^ In particular,
it stressed that,
.’.. given the failure of the medical profession
to consult with interested parties and indeed
the general public in key areas such as
professional discipline … [the Inquiry] should
make a separate clear recommendation
concerning … a consultation process over
details for reform in all areas … [including]
… the Ministry of Women’s Affairs, women’s
health community groups and other
consumer organisations.’^
The Closing Submission ended with an appendix
containing draft legislation for a Patient’s Bill of Rights and
for reform of medical research procedures, including ethics
committees with investigative powers and representation
of women and minority racial groups.^”
The proposals put forward in the Closing
Submission became the blueprint for refonn. Legislation
was eventually enacted as the Health and Disability
Commissioner Act 1994, becoming operative in 1996.
It adopted the model of the Human Rights Commission
but established a separate Health Commission charged
with the development and enforcement of a Code of
Health and Disability Consumers Rights. Prosecutions
for breaches of the Code would be heard before the
Human Rights Review Tribunal.^’

The Third Submission is obscured by recent academic controversy: a discussion of the New Zealand Code of Patients’ Rights ignores the
feminist argument and suggested that it originated in
Judge Cartwright’s personal experience.^^

Were the feminists wrong?

In 2008, the original medical facts of the
‘Unfortunate Experiment’ were reconfirmed in an article in
Lancet Oncology, which re-examined cases of CIS in
National Women’s Hospital from 1955-1976.^^ The study
confirmed that women whose lesions were not eradicated
faced higher risks compared to those whose lesions were
removed and followed up to ensure elimination. Thirty
years after diagnosis, in women who initially had their
lesions fully removed, disease progression was negligible
(0.7 per cent); while those who only experienced
diagnostic procedures had a disease progression rate
of 31.3 per cent. Of these lafter women, the rate of
invasion of cancer cells, in those who also had evidence
of continuing abnormalities two years after diagnosis, was
50.3 per cent. Delays in treatment of curative intent were
confirmed to be dangerous.
Despite this confirmation, after publication of the
2008 article, challenges to the Inquiry findings were
reinvigorated. Linda Bryder reopened the case in her
2009 book, A history of the ‘Unfortunate Experiment’ at
Nationai Women’s Hospital which questions the reality
of the ‘experiment’ and the findings of the Cartwright
Inquiry.^

Bryder argued that the women received standard
care and experienced few adverse effects. She concluded
that Cartwright merely reinforced reforms in medical
ethics and patients’ rights which were already underway
internationally.
Bryder’s thesis was not based on the clinical case
histories which formed the foundation of the Inquiry’s
findings and which remain the crucial primary sources.
Two case histories were, however, published in full the
Cartwright Report.^^

Bryder analysed one of the cases, for
her book, that of Clare Matheson, but importantly failed
to understand its full medical implications. She reports
that Clare was discharged after successive ‘clear’ smears
but does not acknowledge the Inquiry evidence that this
occurred because her cervix was so scarred that it could
no longer yield appropriate epithelial cells for a smear.
More seriously, Bryder ignores the histology report which
included ‘fragments of carcinoma devoid of underlying
stroma’, which established beyond doubt that she was
known to have CIS at the point at which she was discharged
from hospital follow-up and the research project.^^
In 2010, McCredie, Paul and Jones entered the
dispute, claiming that analysis of case notes, coupled with
an independent review of the original slides and smears,
showed that Green was not, as he claimed, saving women
from invasive surgery.^^ The women who initially had
diagnostic biopsies actually experienced far more surgical
procedures than those whose lesions were initially fully
removed. The paper showed that, ‘women initially managed
by punch or wedge biopsies alone had a cancer risk ten
times higher than women initially treated with curative
intent’.^^

It might have been expected that the publication
of this medical evidence would have shown that Bryder’s
thesis was incorrect. However, controversy continues, most
recently in the publications of the British Royal Society,
prompting serious criticism of the feminists involved.^’
Bryder criticised the feminist initiators of the Inquiry,
particularly Coney, who, she argued, had co-opted the judge
and the machinery of the Inquiry to advance the feminist
cause. Bryder implies that feminist involvement discredits
both the process and findings of the Inquiry and its associated
reforms. The Inquiry’s significance did not, however, lie only
in the treatment of a disease. Its lasting influence is over the
relationship of patients to the medical system. Professor
Sir David Skegg has written, ‘The most important legacy
of the Inquiry related not to medical research but to the
whole delivery of health care’.^” The unique contribution of
feminism to the Inquiry was to establish patient interests
as the centre of concern; patients’ experience became the
yardstick for the effectiveness of the health service. This
was a profound change in perspective. Crucially, feminists
also established a blueprint which prevented the medical
profession from acting as judge and jury in adjudicating
patients’ complaints.
Without feminist input the Inquiry could have become
a legalistic exercise pitting teams of doctors and lawyers in
hair-splitting combat but ultimately leaving the autonomy of
the profession intact.^^

The Cartwright Inquiry contrasts with
similar inquiries in Britain such as the Bristol Inquiry, where
there was no sustained organised consumer presence
and which had little impact on the structure or process
of patients’ rights.^^

The complaints procedures in Britain
were overhauled in 1993 when legislation created the post
of Health Commissioner for England.^^ Without legally
enforceable rights for patients, though, this initiative remains
an adjunct of self-regulation by the English profession
rather than a means of patient empowerment as it did in
New Zealand. The crucial difference between England and
New Zealand lies in the concerted and consistent input of
feminists in the latter.

The Cartwright legacy: were feminist
arguments irrelevant?
Some medical critics have argued that feminists
made little contribution to the Cartwright legacy because
their hostility to doctors’ authority impeded the momentum
of health reform already in train at the time of the Cartwright
Inquiry, or that they uncomprehendingly pursued the
recommendations of the Report as ‘holy writ’.^” In truth,
examination of feminist submissions shows that their
primary concern was to turn public outrage into effective,
comprehensive reform of the health system rather than
seeking retribution from individual persons or named
institutions.

The Cartwright Report reinvigorated the
WHM. Many organisations and individuals campaigned
publicly and lobbied Government for implementation of
the proposals set out in the submissions and outlined
in the Cartwright Report. Implementation was long and
sometimes tedious, albeit eventually, largely successful
because many aspects of the reforms conceming patients’
rights and ethics were adopted.
There were, however, two significant differences in
the final f?eport from feminists’ original proposal. Firstly, the
WHM lobbied for the Office of the Health Commissioner
to be the single entry point to the medical complaints
system. The intention was that a unified route would
provide comprehensive monitoring of the performance
of individuals, institutions and the health system as a
whole. Advocates did not foresee that the single gateway
could also become an entry barrier controlled by a single
gatekeeper.

Although there were genuine benefits for
patients when the Commissioner took on the burden of
acting for the patient, it also meant that patients could not
act independently for themselves. Furthermore, patients
were given no independent right of appeal.
Secondly, feminists argued that the autonomy
of the profession was a critical problem. Their proposal
intended to limit professional self-regulation and to
create a separate arena for the judgement of complaints,
independent of medical control. However, organisations
representing professional interests strenuously, and often
successfully, opposed the loss of self-regulation and the
erosion of medical autonomy.

Professional resistance to reform

Unsurprisingly the proposals were highly political.^^
The medical profession, especially the New Zealand
Medical Association, lobbied the National (conservative)
Government against the Bill.^^ In 1993, Health Minister
Birch proposed changes to the Bill, which would meet the
minimal requirements of the Cartwright Report but omitted
key features of the feminist blueprint.^’

By this time, there
was a serious media backlash against Cartwright.^^
Nevertheless, in the face of an impending election, strong
support from nurses’ organisations, the YWCA, WHM and
effective co-operation by Labour MPs, the conservative
Government dropped its proposal.^^ Had this lobbying
been unsuccessful, the system of dealing with patient
complaints in New Zealand would now be similar to that
which persists in England, where the law provides only
weak protection of patients’ rights.
Nevertheless, the well-funded professional fight
back against the loss of autonomy succeeded in limiting
reform. Retaining influential Wellington lobbyists, the
medical profession and Ministry of Health developed
a second Bill without any public consultation.

Before the Health and Disability Commissioner Act 1994 became operative in 1996, the Medical Practitioners Act 1995 became law, catching the WHM unprepared.^°°

It established another parallel tribunal, the Medical
Practitioners Disciplinary Tribunal, with a majority of
members drawn from the medical professionals and a
judicial chair. The stated intention was merely to judge
fitness to practice and registration. This Act however, also
provided for Complaints Assessment Committees (CACs),
a majority of whose members were doctors chosen by
the Medical Council. Although intended to play a minor
role weeding out vexatious complaints, these committees
developed into a parallel system as effective gatekeepers
for and de-facto judges of complaints.
The CACs ran in parallel to the Commissioner
and re-investigated and re-heard evidence and came to
conclusions about doctors’ performance sometimes at
odds with the Commissioner or the ACC. For example,
the ACC had found that, in Northland, six female patients
of one doctor had sustained ‘medical error’, equivalent
to negligence in other jurisdictions, but only one of
these cases (in which the patient died) led to partial deregistration
of the doctor.’”^
Elevating the role of the CACs had the effect of
reasserting professional control. The 1995 Act provided
nothing ‘to stop the professionals running the complainant
out of energy and money through endless delays. One
Northland women was stuck in a CAC for five years
before she finally got a hearing before the Tribunal,
which she won’.^”^ The line between professional selfregulation
and self-protection seemed indistinct; but, in
extending the power of these in-house Committees, the
profession overplayed its hand and eventually prompted
further legislation limiting their jurisdiction. Thanks to the
determination of the Northland women, the most obvious
injustices of this system were partially ameliorated by the
Health Practitioners Competence Assurance Act 2003.
While the new Act retained the complexity of the three
parallel systems (ACC, professional discipline and Health
and Disability Commissioner), it required prompt referral
of all complaints to the Commissioner, enabling charges
to be laid directly before the Professional Disciplinary
Tribunal.
The problem of patients obtaining adequate
compensation for medical injuries remained unresolved.
This lack of compensation, which the feminist initiators
had tried consistently to address, was further compounded
as successive Health Commissioners resiled from using
their full powers, preferring to pursue a policy they called
‘Learning not Lynching’, rather than seek substantial
penalties or compensation for breaches of the Code of
Patients’ Rights.

Conclusion
The original feminist reform plan was far from
irrelevant. No other group put forward concrete and
comprehensive suggestions for change. While previously
there had been only two routes through which patients
could hold professionals to account, there is now a third
way, which is dedicated to patients’ rights. As envisaged
by feminists, the jurisdiction of the Code covers all health
professionals, while the Commissioner has extensive
powers to investigate individual practitioners, management
incompetence and systemic failure. This is of increasing
importance as health service restructuring, inspired by neoliberal
political economy, increases the scope of managerial
decision making in medicine.
The development of the Code and appointment of the
Health and Disability Commissioner were powerful steps
towards achieving patient-centred health delivery. The
Code established in law the right to be treated with dignity
and respect, and implants the principle of informed consent
across all aspects of the health system including teaching,
research and treatment. Observation of the Code and
patients’ rights are supported by independent advocates
contracted by the office of the Commissioner from private
providers in all regions.
The ethical evaluation of research is separate from,
but parallel to the system of patient rights. A network of
regional Research Ethics Commiftees was established,
each with a ‘lay’ chair. Half of the committee members
must be people who are not health professionals but
who, while not accountable representatives of community
organisations, do have a clear patient protection focus.^°^
The most fundamental result of the WHM, in general,
and the feminist contribution to the Cartwright Report, in
particular, has been the widespread acceptance of the
principle that all medical interventions must be judged
through the prism of patient experience.^””
In England, the Health Services Commissioners
Act 1993 established a Health Services Commissioner, to
handle patient complaints, with wide investigative powers
and an ability to negotiate financial settlements with
health providers. However, with neither a legislated Code
of Patients’ Rights nor a legal enforcement mechanism,
remedial action is largely limited to persuasion. In most
jurisdictions, including Great Britain, the enforcement
of patients’ rights still relies on professional disciplinary
bodies, or in the case of severe physical injury, court action.
Without adjudication external to the profession it can be
used to reinforce professional solidarity rather than protect
patients’ rights.
The relative success of the New Zealand system,
which is accountable to patients and external to the medical
profession, raises the question of why these innovations
have not been enacted elsewhere. In England for example,
inquiries into gynaecology at Ashford, breast screening in
Exeter, cervical screening in Canterbury, deaths associated
with Dr Shipley in Yorkshire, excess deaths in mid-
Staffordshire, the treatment of children at Bristol Children’s
Hospital or more recently, cases of deficient or unnecessary
breast surgery, have resulted in the censure of individuals
and institutions, but did not lead to independent arbitration
of patient complaints.^”^ Although health re-structuring in
England embraces patient empowerment rhetoric, the
independent Ombudsman’s powers are not backed by
enforcement processes through which this empowerment
could be realised; and the Patient Advice and Liaison
Service (PALS) accords less priority to upholding patients’
rights than to customer relations.
In 1987, in New Zealand, there were two momentous
events. The hearings of the Cartwright Inquiry got underway
with great fanfare while the State Services Act was passed
almost unremarked. Cartwright brought a new patientcentred
approach to the design and management of health
systems and to medical ethics. The State Services Act
introduced New Public Management (NPM) to the developed
world.

Over the intervening twenty-five years, consideration
of patients has been increasingly eroded by the precepts
of NPM and the demand for rationing, except perhaps in
the minds of patients and constituents. Internationally, the
new managerialism, not the Cartwright Report, exercises
increasing infiuence over the development of medical ethics
and clinical practice.^”^